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Free barking is assured when you go to most Patient and Public Involvement type groups and we hear that has been the case at the Birmingham Local Involvement Network which is still weaving its nets .. We are not quite sure what from though . Mind you there is raw material and hemp in Birmingham - we have heard that okay ...
So far we see no real evidence of a Mental Health Working Group going places and monitoring mental health in the large Birmingham and Solihull Mental Health Foundation Trust and the local Social Care system . We hear from whispering staffies (cheeky devils) that the Trust is pleased there is very little threat of monitoring so far . We also hear from the internal User's Voice org, paid for by the Trust and kept in sandwiches and meetings few attend - that UV feels safer if there is no-one to watch its tepid very un-independent existence .. Its surprising how honest some of them are ..
We did check for minutes of most of the so called "LINks" working groups and we could find none on the website HERE
We'll come back to this area of Dogland later ..
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So far we see no real evidence of a Mental Health Working Group going places and monitoring mental health in the large Birmingham and Solihull Mental Health Foundation Trust and the local Social Care system . We hear from whispering staffies (cheeky devils) that the Trust is pleased there is very little threat of monitoring so far . We also hear from the internal User's Voice org, paid for by the Trust and kept in sandwiches and meetings few attend - that UV feels safer if there is no-one to watch its tepid very un-independent existence .. Its surprising how honest some of them are ..
We did check for minutes of most of the so called "LINks" working groups and we could find none on the website HERE
We'll come back to this area of Dogland later ..
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8 comments:
I agree re LINks which were set up to replace Patient and Public Involvement at the point when it did seem to have a chance of working.
It seems to me, from being around in this area of work for 21 years, that this happens every time any kind of involvement threatens to make a difference.
Some of the Patient and Public Involvement Forum's were performing reasonably but in mental health they were caged partly by middle class influence (probably as they were in other health arenas too) . That influence tended to tame the more critical voice of Users. We know it ..In B'ham it resulted in Users rights not being upheld properly and not being pursued properly. A missing report intended for the Board demonstrated that as did other factors and issues which Users eventually pursued despite the PPI's reluctance .
The problem with PPI thinking in mental health is it was an ideological part highjacking of patient's rights to have more choice . Its diversion looked like a claim to enhance User rights but on examination Users who were recruited by Trusts for instance as inhouse PPI links have become like the bureaucracy that employed them ..
Nothing has changed 20 , 30 and 40 years ago Trusts had their User-pets ..
You may note there is widespread discrimination against Users in so far as MH Users cannot exercise Patient Choice in an equivalent way to say the general populace who can choose a hospital and consultant on the basis of Patient Choice ..Users should have that right in some circumstances where they are wanting another form of recovery ..
PPI must be seen in a wider so called reformist context which in the main has re-created the same old bureacratic and class tricks of assimilating a compromised and compromising section of Users who in the main wanted careers ....
Its just a fact ..
We know plenty of Users who are marginalised and simply cannot trust the system to deliver health for them .. We also know of the Users who are the systems puppets .. Its a sad shame .. But its politics and life at work in its user socially excremental way ...
Nice to see you Jan W - who would have thought you would have come to the cheek and hackle zone ..
Jan,
You are partly responsible for a lot of the bureacratic abuse MH service users face in trying to achieve patient choice in mental health as you have been deeply implicated in abusive top down user representation initiatives for years .
You havent done much to enable patient choice at all , I had the misfortune of becoming embroiled in your bulshit , you arent even vocal in pointing out that MH service users are largely excluded from the patient choice agenda. You have simply pushed a deceitful rights based approach that gave rights , priviledges , attention , kudos and money to middle class selfish 'users of users ' like you.
Thats not Patient Choice Jan.
Love your pic though - circa 1993 isnt it?
I found this blog by accident, but since I am getting slagged off by it thought I should put in my pennorth. I am almost a local these days, since I quit my 'middle-class' wellpaid contract at the Mental Health Research Network because it was not genuinely involving users. I've moved to Worcester. Now I don't have a job.
RE PPI, I agree about the origins of it being the hijacking of what was already there, this is what happens again and again, but at least service users were trying to make something of that structure they were given, now that's been abolished and new structures created, it seems like anything that begins to work is going to be abolished.
Re Pyramids and heroes.
I don't have any role in the imaginary 'Pyramid' someone put me in in a previous blog entry. I am just trying to make enough through short term bits of work to pay my rent. Is scraping a living doing research and consultancy anti-service-user?
Re NSUN, I have no role at all though I've joined as a member. I wrote the report on which the bid for NSUN was based. The report is called On Our Own Terms and can be dowloaded from Sainsbury Centre.
I did for a while coordinate a group of people representing service user led organisations such as UKAN, Hearing Voices, Awaaz, No Panic, Borderline UK, who wanted to take this work forward and bid for funds to run a national network. Then this coordinating role went into other hands and I moved on.
At some point, the original On Our Own Terms group I coordinated was left behind and I think, and have said many times, and will say again, that's where things went wrong.
I was later invited to get involved with setting up the first NSUN management group. During this time, I continually pointed out that NSUN would have serious problems if it was not seen to belong to grassroots service users.
I was told that maybe mistakes had been made, but the important thing was to get the funding and then service users could get involved and run NSUN through its management committee. I continued to argue that a bridge must be made between this new process and the original process, and I don't think this ever actually happened.
NSUN does now exist, it has had and still does have problems, though there are good people involved.
I believe a large part of the problems are to do with failure to take the survivor/user movement with the process, because if NSUN is not accepted as the legitimate voice of a large part of the survivor/service user population, what is it for?
I don't know what can be done now except for service users to get involved and try to make NSUN work the way it should work. Otherwise all that money will go to waste and charities won't again give money to a similar bid.
PS the photo was taken last year by me at home.
PPS No way am I middle class, never was, never have been, I came from a lovely street in Coventry now called Tarquin Way, look it up on Google.
PPPS I've managed to stay away from mental health services because my first experience of them was to be given ECT, valium, barbiturates, mogadon and sexual abuse by my psychiatrist. Out of self preservation I managed to stay away from them after a year of this treatment. I don't claim to be a current service user, I just do work that I am qualified to do and try my best to do it according to my principles. I am not a 'leader' in my view, I am a researcher and a co-ordinator.
Sorry, fans and others, my Coventry home, where I lived for 11 years, from age 5 to age 16 was not Tarquin Way, it was Tarquin Close, Willenhall, Coventry, formerly known as Ivy Walk.
If you Google 'Tarquin Close Willenhall' it will give you an idea of what sort of place it was and still is. A council estate where so called 'problem families' were put because nobody would choose to live there if they didn't have to. I don't think it is fair to assume I am 'middle class' just because I managed to get a mental health job after many years of bringing up kids and doing temp agency work cos they don't ask too much about your past.
Jan,
I can understand why you thought establishing a national body of mental health service users was a good idea way back when but now you've seen NSUN morph into salaries for the usual suspects and little else surely you must see that pressing for patient choice in mental health is far more important ?
You know what really troubles and saddens me Jan? That people like you and the likes of David Crepaz Keay have publicly claimed you have managed your own mental health issues away from the abusive mental health system but this doesnt bear up to scrutiny as you have all lived off the mental health system as very priviledged beneficiaries , maybe on the periphery of the system but you didnt turn your backs on it you were simply assimilated and became just as institutionalised into and dependent on the mental health system as the people David implicitly criticises for not being more like him.
You seem to have downsized and distances yourself a bit from this of late and well Worcester is a pleasant place to wind down and die in . I was placed in a home near there when I was a kid and can remember trips into Worcester and Bromsgrove and the surrounding countryside sometimes venturing out as far as the Kinver caves or Hereford.
But time passes , we learn things and move on.
David and co havent moved on though because they cant because they've become trapped in mental health careers in which they have to always pretend to be messianic saviours of other service users .
This week its fronting an £800,000 MH Self Management scheme in Wales to help people lead more independent lives and save services spending money on costly interventions.
Actually David is fronting that.
What does David know about leading an independent life Jan?
When has he not been relying on the mental health system to pay his mortgage?
PPI Commissioner, PPI Policy Advisor, Charity Director, NSUN head, Welsh programme lead ...hang on , if 1 in 4 people have MH issues how come a handful of people joined to the MH charity sector and DOH and DWP advisory groups at the hip keep getting these ' I am your leader ' type jobs?
The math doesnt stack up.
I dont need to be led by anyone Jan. Nor do the majority of other service users I know but dont take my word for it, just look around , service users havent joined iniatives like NSUN in droves and they never will.
But they do want to be able to make the same choices about their treatment and care that other patients are now allowed to make.
Only they cant as the patient choice agenda doesnt apply to us and yet NIMHE, the MH charities ,NSUN and people like you and David have done precious little to challenge that discrimination.
NIMHE and the MH charities have ran countless anti stigma and discrimination campaigns but not one has challenged the MH system that helps fund them.
Its as if Patient Choice wasnt as important to the MH charity sector and of course it cant be otherwise it would have been pushing for more of it so that people could influence things at a local level themselves.
Instead people like you sought to create a monumental national survivor movement while fooling yourselves that you were somehow living outside of the system.
What was NSUN going to do Jan?
The reality is you arent a survivor, you've had a comfortable symbiotic relationship with the system , its fed you , you look well Jan. You havent survived, you've thrived and prospered through dependency on the system. And thats ok in sense that its what people do because they are fearful of change but what about those who havent had that kind of support from the system that you lot have had Jan?
What about those who have had services they depended on modernised away to suit people like David and his friends within the charities who see other peoples dependency as bad but are blind to their own.
Why are you out of work Jan?
Why arent you an architect?
A zookeeper?
A service engineer or a sex worker?
These are the mainstream type of jobs that David and his friends wanted to train an army of CBT therapists to thrust other MH service users on benefits into after a few CBT sessions.
Only the master planners didnt see the recession looming.
So, you know the funded environment, its all change , knock up a few new bids for a couple of other pilots , a Self Management scheme perhapsand the Mental Health Foundation's call for a national campaign to save society from going mad through fear because, well the recession and the embarassing CBT therapist army fuck up will leave a big hole in their finances unless they can come up with another money spinner.
Thats the charity that sends middle class people away on sponsored bike holidays to Cuba to pay its staff's wages.
The King has No Clothes on Jan.
Look in the mirror.
JanW,
You didnt get a job in MH because 'they didnt ask too much about your past' , you got a job in MH because you agreed with the people offering the jobs .
But its interesting how your confidence and self esteem craps out when confronted with mainstream employment because you know its fucking Darwinian out there.
Outside of the MH funded environment all you guys are dead fucking weight.
Jan ,
A lot of Users or people claiming to be part of User-dom propped up NIMHE which ultimately was a sell out and face for a more rawer policy of getting the mentally ill back to work ..
The tragedy has been NIMHE used up a hell of a lot of money (100 million by 2009)
That's a lot of lost treatment opportunities.
When you add in CSIP's budget and little "shifty" which Gary of the Hogs runs, you are closer to 140 million ...
The planning behind NIMHE was SCMH and despite their "reformist" image they helped to close down asylums and the increase in the mentally ill going into prison (part of the result)was entirely predictable. SCMH bleat about it now.
The User brigades though at NIMHE and in UIP and CUIP and other such groups believed in reform and the User-Voice . The problem is Patient Choice in mental health was the underlying real but refused agenda and it was thwarted by flag waving by the hynotised who diverted visions to National User Approaches and other rhetoric ..
At NIMHE you were termed an "expert by experience" and you were paid , and yet you have told us you left MH care etc a year after the distasteful abuses you endured earlier in your life .
Its fair comment to ask what you were expert in ? Research ? But not the life it seems and grind of a Users who are set for premature death - and we lost people like that ..
Jan - you gave credibility to a system that used people up and amounted only to a job creation schemes for the most able .. You will not be the first or last - many people were misled but you were in a privileged enough position to see what was happening long before many .
What surprised many people (and those at UserWatch) was why some radicalism was not re-invented by what became recognised as the elite Users or "Super-Users of Users", and Patient Choice as a matter of equality and human rights pursued.
But the realisation came home that figures associated to Charities and circles of influence were out for themselves primarily .They used User-issues as career fodder and still do ...
Is it morally palatable to the rest of us on the end of no choice and shit but invalidating services full of glossers ?
No ..
Its been hard to watch the slow death of some Users and its just a fact the new choiceless NHS system for MH Users will claim more people often oh so slowly . The gain of elite ex Users and those who played in NIMHE and other circles, was death for others in mental health and chances of health choices never realised ..
People need to become themselves not become system driven puppets and User-bureaucrats - but that has become circumvented by false ideology benefiting the few but not the many.
Sad isnt it ?
All that happened in MH over the past few years is a kind of paid up class system was reproduced and patient choices of treatment at the bottom was shelved ..
PG
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